National Prostate Cancer
Conference organised by Patients for Patients
Abstract
Some
200 people collected at the Playfair Library, Old College, Edinburgh
on the 12th March this year to participate in our first national
conference aimed in the first instance at patients with prostate
cancer. A high percentage of the delegates were sufferers from
this number one male cancer or their carers, and the remaining
delegates were highly involved professionals from medicine, from
the prostate cancer charities and from government. Delegates were
treated to a number of extremely interesting presentations during
the morning and in the early part of the afternoon, and were able
to get involved later in the afternoon in an Open Forum session
to identify those issues that patients most wanted to be actioned.
By all accounts, delegates and presenters felt the whole event
was thoroughly worthwhile.
The
conference was opened by our President, John Duncan
who, in turn, introduced Lord Steel of Aikwood,
Prostate Cancer Support Scotland’s Patron. The latter talked
seriously but amusingly about his experience of and recovery from
prostate cancer and then introduced the keynote speaker.
Dr Aileen Keel CBE, Deputy Chief Medical Officer and
Chair of the recently established Scottish Cancer Task Force gave
a very interesting talk that generated robust exchanges, particularly
in the context of the NHS position on screening. Currently, diagnosis
includes the use of the PSA blood test, which is regarded by the
NHS as insufficiently accurate and can lead to inappropriate diagnosis,
unnecessary anxiety and over treatment. Dr Keel confirmed, nevertheless,
that men over 50 should not be denied a PSA test by their GP,
if they asked for it, but GPs do need to explain to patients the
pros and cons of this particular test.
Next
there were presentations providing up to date information on the
latest treatments and developments from the medical profession.
Around 2500 new diagnoses of prostate cancer are made in Scotland
each year, and with the ageing population this number is set to
increase. Around 1000 men die of prostate cancer each year but
the hope is that with earlier diagnosis and improvements in treatment
this number will decrease not increase.
Professor
Mustafa Djamgoz, Professor of Cancer Biology at Imperial
College London, talked about “ a new approach to understanding
and managing prostate cancer.” His studies have shown that
only cells with strong metastatic ability expressed a functional
“voltage-gated sodium channel (VGSC) protein. The latter,
, it is proposed, is a novel prognostic marker of prostate cancer
and moreover there exist non-toxic blockers of this protein that
could be effective against metastatic disease.
Dr Robert Jones, Honorary Consultant Medical
Oncologist at the Beatson West of Scotland Cancer Centre, Glasgow,
reviewed some of the new drugs and the measures that must be taken
to ensure that prostate cancer patients get the very best treatment
now and in the future. Dr Jones was very clear that it is crucial
to conduct well-designed, accurate clinical trials before concluding
that a drug is or is not effective.
Dr Duncan McLaren, Consultant Clinical Oncologist, Western
General Hospital, Edinburgh had as the title of his presentation
“Radiotherapy in Scotland-The dawning of a new age”.
Improved imaging of the target, greater certainty in accuracy
of treatment delivery and resultant dose escalation will improve
cure rates through increased tumour ablation. Moreover, said Dr
McLaren, these gains will be met without increasing normal tissue
damage and therefore without long term toxicity.
Professor
Hing Leung, Professor of Urology/Surgical Oncology and
Honorary Consultant Urological Surgeon, University of Glasgow/
Beatson Institute for Cancer research outlined the current development
and research strategy for patients with relapsed prostate cancer.
In particular Professor Leung reviewed the evidence for the benefit
and potential side effects of prostate cryotherapy, and gave delegates
an overview of the principle of this treatment together with an
outline of the development and referral strategy for the Scottish
Prostate
Cryotherapy Service.
Professor
James N’Dow, Professor of Urology at the University
of Aberdeen, spoke in his usual, highly entertaining style on
“Making evidence-based practice relevant to patients with
Prostate Cancer”. James N’Dow is spearheading efforts
to make life better for patients with urological problems.
Dr
Alan McNeill, Consultant Urologist at the Western General
Hospital, Edinburgh coped admirably with the task of moderating
questions from delegates and the answers to these from his medical
colleagues. Dr McNeill also had some penetrating comments of his
own to add.
In
the early afternoon there were presentations by the Scottish charities
specifically devoted to prostate cancer and from UCAN which has
a somewhat broader remit than simply prostate cancer, namely urological
cancers in general.
John
Duncan, President of Prostate Cancer Support
Scotland, in his welcoming address at the start of the
conference, had stressed that our organization is managed by patients
for patients, and that this brings definite unique strengths in
terms of their experience of prostate cancer; but health considerations
intrude on the ability of individuals to take on these management
roles. In the afternoon, John stressed the primary importance
of the ten local support groups running their own day-to-day affairs,
but also made the point that regular input from the managers of
these groups at “executive” meetings in Perth allowed
consolidated actions to be contemplated. The concept of “
strength in numbers” was stressed as was the hope that all
the prostate cancer charities in Scotland would continue in the
present spirit of imaginative collaboration.
Adam
Gaines, Director of Prostate Scotland,
reiterated the point made by the previous speaker about working
in partnership. Prostate Scotland has concentrated on ways of
encouraging men aged over 40 to learn about their prostate and
the diseases that affect it. They have developed a multimedia
website which includes videos featuring men with prostate disease
as well as clinicians, and presents information in accessible
and non-jargonistic ways. Prostate Scotland’s next major
project is a prostate health information and advice initiative
for men, their families and partners, as well as for GPs and primary
care staff.
John Neate, Chief Executive, The Prostate
Cancer Charity, reminded delegates that although much
has changed for the better in the last 10 years, huge challenges
still lie ahead. Long term underfunding of prostate cancer has
resulted in a plethora of unanswered questions about prevention,
testing, treatment and awareness raising. But much can be achieved
if all concerned move in the same direction with a sense of common
purpose. Whilst recognizing that there are specific dimensions
to the way that prostate cancer is dealt with in Scotland, John
stressed aspects such as population mobility within the UK and
cross-border collaboration. He felt that all charities working
within the prostate cancer field in Scotland have something to
bring to the party and collaboration, as well as the energizing
effect of competition, is to be welcomed and encouraged. The Prostate
Cancer Charity draws on a substantial team of skilled staff based
in London and Glasgow, funds several research projects in Scotland.,
and is involved in information provision, volunteer-led awareness
raising and support services, and nurse education, amoungst other
activities.
Professor
James N’Dow,
MD of UCAN,gave an outline of the work being done by this urological
cancer charity, of which he is co-founder. This charity is establishing
a research centre of excellence in Aberdeen that will study the
best ways of treating patients and the best ways of managing some
of the unwanted effects of treatment. It will also take steps
to improve the flow of information, raise awareness and reinforce
the benefits of early diagnosis.
Later
in the afternoon, there was a unique Open Forum of patients and
carers proposing local and national actions and voting on priorities
around all aspects of prostate cancer from awareness, through
prevention, detection, diagnosis and treatment, to the heart of
the aims of the conference, namely the support of those suffering
from prostate cancer.
A
lively, interactive discussion moderated by our Kerry Napuk ,
generated 27 proposals for actions. The top priorities were as
follows:
1. Educate GPs (68 votes)
2. Research improved screening test (55)
3. Screen families(with PCa histories) (49)
4. Equal treatment, no postcoding (42)
5. More awareness in TV/Sport (40)
6. Standard PSA test to be offered to all men over 50 without
symptoms(37) and Increase emphasis on diet (37)
For further information on Prostate Cancer Support Scotland, please
navigate around this web site.
Quotations
from those in attendance:
“Thanks
for your efforts in organising and running a super conference
yesterday. I thought it was very successful, and enjoyed hearing
the speakers and audience questions.”
Dr Axel Thomson - Research Scientist - Prostate Cancer - MRC
“Well done to you and your colleagues on organising such
a successful conference. You managed to attract an excellent attendance,
and there was no doubt that the audience was enthused and enthusiastic.
There is a real opportunity for raising the profile of prostate
disease and cancer. Most men (between 50 and 75) are not aware
of what symptoms should be acted upon, and what symptoms can be
disregarded - there is a real opportunity to educate chaps about
what matters, and what they should be doing.
Dr John Steyn- General Practitioner
“Many
thanks and congratulations to you and your colleagues on a very
successful conference yesterday- it was a very good event.”
Adam Gaines - Director Prostate Scotland
“Congratulations
on organising a very impressive conference.”
Dr Rob Jones - Lecturer and Consultant in Medical Oncology and
lead clinician on the new drug, Abiraterone Acetate.
“I
greatly enjoyed the conference. Many congratulations, again, for
making it such a success”
. Professor Mustafa Djamgoz , Professor of Cancer Biology?Imperial
College London
“I
thought it was a great success and all involved are to be congratulated
on putting together
such a good event that will help bring the cause to the attention
of the policy makers.”
Dr Alan McNeil, Consultant Urologist, Western General Hospital,
Edinburgh
